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As a patient advocate for inflammatory bowel disease (IBD), blogger and board member of the Intense Intestines Foundation, Marisa Troy of Westchester County, N.Y., spends a lot of time connecting people in the digestive health community. However, Troy who was diagnosed with ulcerative colitis at 13 and has since had 14 surgeries, felt isolated for years.

Because she felt her disease was ‘gross’ and ‘embarrassing,’ she didn’t feel comfortable talking about it. “I spent so much time hiding who I really was,” Troy said. “It took a huge, huge toll on me.”

Troy’s embarrassment regarding her severe digestive symptoms stemmed largely from the ileostomy she needed at age 16 – in which the colon and rectum are removed, and a pouch is attached to a hole in the abdomen (the ilesostomy) to collect waste.

Ulcerative Colitis: In Plain Sight

Aside from her parents, very few people knew what Troy was going through as she struggled with symptoms such as urgent episodes of diarrhea anywhere from 30 to 50 times a day. As a swimmer, she was a big eater, but once ulcerative colitis hit, she had to avoid food that upset her stomach, which was nearly everything. For months she lived on plain pasta, Saltines, and other crackers. Even water bothered her.

Her symptoms and surgeries meant she would miss an entire year of high school and had to take two exams while in the hospital. But until recently, her friends had no idea what she was going through. She talked about her disease in general, but didn’t share details.

Things started changing when her mother encouraged her to check out a Web site called the J-Pouch Group, where she connected with a couple of people. Which then lead her to the Great Bowel Movement Facebook page, which raises awareness about Crohn’s and Colitis.

The more she connected with people, the more she became more involved. She did a two-day bike ride for another organization and finished the weekend feeling like she had a whole new family. “I finally embraced my community,” Troy said.

A couple of months later, she started her blog. When she put a blog post on Facebook for her friends to see, she said it blew people away. “They knew I had been very sick but had no idea the details of what I was going through physically and emotionally,” she said. “It was very therapeutic.”

Since she started connecting with others, Troy feels like a weight has been lifted. Knowing other people who know what she’s going through helped validate her experience. Her isolation was over.

Why We Need Digestive Health Awareness

Since ulcerative colitis is a mostly invisible illness, most people don’t understand how serious it can be.

“Most people don’t know someone with ulcerative colitis or an ostomy,” said Frank Sileo, PhD, a licensed psychologist and executive director of the Center for Psychological Enhancement in Ridgewood, N.J., a national speaker on IBD, and a children’s book author who writes books about IBD. That's part of why the topic is still cloaked in mystery.

Troy said that some people compared her ulcerative colitis to food poisoning or irritable bowel syndrome because some of the symptoms are the same, but her disease is much more severe.

Greater awareness of IBD such as ulcerative colitis is really important, she said, because "the more people understand, the easier it is for patients.”

Ulcerative Colitis: What You Need to Know

Ulcerative colitis affects both men and women, young and old, said Peter Mavrelis, MD, a gastroenterologist at St. Mary Medical Center in Hobart, Ind. People who get it are genetically predisposed to the disease, and it’s probably triggered by an infection.

Your body’s immune system revs up to fight the infection; once it's gone, your immune system reaction should go away. But for people with ulcerative colitis, the body doesn’t turn off the immune response, and they have chronic inflammation in the colon.

The most important thing to do is to get a correct diagnosis and make sure you don’t have an intestinal infection that can mimic the disease, Dr. Mavrelis said. Your doctor will collect stool cultures, give you a physical, and typically order a colonoscopy and a biopsy of your colon.

For most people with ulcerative colitis, long-term medication may suppress the inflammation in the colon, Mavrelis said. He also tells his patients to avoid nonsteroidal anti-inflammatory drugs (such as Motrin, Advil, and Aleve) because they tend to make inflammation in the colon worse. When long-term medications don’t work, steroids, which should be used short-term, can also help.

Although less than 5 percent of patients need it, severe cases of ulcerative colitis could require surgery. However, Mavrelis said, today an ostomy may be avoided, depending on how severe the disease and the health of the patient. In those cases, the small bowel can often be connected to the anus, and a pouch won’t be needed on the outside.

Sometimes symptoms remain after ostomy surgery, said Joseph J. Pinzone, MD, medical director of AMAI Medicine and Wellness Practice in Santa Monica, Calif., and an assistant clinical professor of medicine at the David Geffen School of Medicine at UCLA. Although the body is very adaptable, some people still experience incontinence, diarrhea, rectal bleeding, mucus, abdominal pain, and urgency to use the bathroom. However, Dr. Pinzone said that the symptoms are an improvement over what people experienced before surgery.

Although Troy’s experience with ulcerative colitis was brutal, she did find positives in it. “It made me a more compassionate person,” she said, and helped her to be nonjudgmental and appreciate the love and support she has.

“I was always close to family, but having this disease made me understand how important it is to have close family, friends, and a support system,” she said. “It has shown me how important people in my life are.”

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